Difficult

Spring has been a little difficult for me. Everyone is talking about their kids little league games and plans for summer camp and it always hits you like a rock that your kids can't do those things. Sometimes it is just sad to realize that life goes on regardless. Kids will grow up and learn new things and discover new things while our kids lose abilities and forget how to do things they once knew how to do - simple things like counting to 10 or knowing their colors. Also as our kids get older it become more evident that they are "different" from their peers and you feel like you are in a world of your own - and it feels very alone sometimes. I know we are not alone but it still feels like it at times. Despite my little funk, the boys are doing well for the most part. Brayden had an echocardigram and showed some mild thickening but doctor said that was normal for a child with Sanfilippo at this stage and it isn't affecting his health in any way. Ryan still needs to have an echo done and we are concerned because he will likely need to be sedated. Brayden is a very lively child with quite the personality. He unfortunately has very few understandable words. He however seems to have a higher cognition at this age than his brother did (while Ryan had better speech). Brayden often does things that "normal" 3 years olds would do and you think to yourself - maybe the doctors were wrong and got his diagnosis wrong... but we know that is not true. Ryan is doing well. He seems to be getting stiff in his legs at times but he is still very active - running, swinging on the swings, jumping on trampoline so he is doing well. Well - that is my update for now!